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Tuesday, March 21, 2017

Siddharth and I are celebrating this special day by flying
to New Zealand for a 2ish week vacation while Samaira, Rehan and Kabir enjoy an
extended party in India with Nani (my mum), Nanu (my dad), Masi (my sister), and
“P & A” (my nieces). Sammy & Rehan can’t get enough of their
cousins & love spending time with them. Kabir has developed a special bond
with Nani that even I can’t compete with. Here is the conversation that
happened as Siddharth and I were heading to the airport to catch our flight to
New Zealand.

Me: Sammy - Mumma & Daddy are going to New
Zealand now and you are going to have a lot of fun with Rehan, Kabir, Nani,
Nanu, Masi, ‘P’ didi & ‘A’ didi.

Samaira (whispering softly): Mumma – Maybe I can come
with you to New Zealand. Is that a good idea?

Me: It is just Daddy and I who are going to New
Zealand this time. How about you party with everyone at Nani’s home and go eat
some ice cream now?

Samaira: Ice cream. Woohoo! I love ice cream. My
favorite flavor is chocolate. But I will have vanilla, just like you. (I had
told her at some point that my favorite ice cream flavor is vanilla.)

…and she ran off to find her ‘P’ didi and “A’
didi so she could drag them to eat ice cream…

---***---

Siddharth, Sammy and Rehan spent a week in Seattle without
me because I flew to India with Kabir one week earlier. We co-sleep, and at
night Siddharth would put Sammy and Rehan to sleep. In this one week, Rehan somehow
always ended up sleeping in the middle as he likes to get sandwiched between Samaira
& Siddharth. Here is what happened in this week:

Siddharth: Sammy – Can I give you a hug?

Samaira: No. I don’t want to be touched. (we have told
kids to be unhesitantly vocal if they don’t feel like giving a hug to someone at
any time)

Next day…

Siddharth: Sammy – Can I give you a hug now?

Samaira: No. I don’t want to be touched. (And she ran
off to play with Rehan)

Next day…

Siddharth: Sammy – Can I give you a hug please?

Samaira: No, Daddy.

Siddharth: But Sammy, I want to give you a hug.

Samaira: If you want to give me a hug, then you can
sleep in the middle and give me a hug! Otherwise you cannot give me a hug.

Siddharth: ??##!!??!! (Speechless)

Both of us were amazed at two things. (a) She is like me in
that if she isn’t happy with something then she shuts down on that topic (I
understand it is neither advisable and nor desirable). And (b), With a little
bit of coaxing, she could articulate the outcome she expected in a situation.
While a lot about this situation is non-ideal and it would be great if both
Sammy and I articulate our issues as opposed to shut-down, we were excited to
see Samaira transfer her emotions into words.

---***---

Samaira tends to avoid doing anything that is hard for her
to do. Her strategy is to get other people to do it for her. For example: If
her hand does not reach a switch and she wants to turn on the light, she asks
Rehan to get a chair so he can climb on it and turn on the light. If Sammy
refuses to do something because it is hard, often this is the conversation that
happens:

Rehan: You can do this, Sammy. You are very strong!

Samaira: (Whining) Noooooo. I can’t.

Rehan: You can, Sammy. Let me show you how (Followed
by a demonstration). Now, you try Sammy.

Samaira: Noooo. Stop it.

While Samaira needs time to warm up to new challenges, it is
heartwarming to see Rehan encourage Samaira to explore her abilities.

---***---

I am convinced that half of Sammy’s heart lives in Kabir.
She is always baby’ing him. Not something Kabir is a fan of though. But he has
got to deal with the all the extra care and affection that Sammy showers on
him. Also, Samaira is convinced that she takes better care of Kabir than we do,
and he is her responsibility.

She will often check his diaper to make sure he hasn’t done
pee-pee or poo-poo. If she suspects anything, she comes to us and tells us, “Can
you please change Kabir’s diaper? He has done poo-poo.”

She is also the first to point out “Kabir is crying. Can you
please give him some milk?”

---***---

If you are curious about what everyday life with T21 as an
integral part of our family looks like, this is what I’ve got for you. This is
our Sammy at 5.

The next challenge we are bracing for is around inclusion.
Meaningful inclusion.

Sammy wouldn’t be top of mind if you are looking for a kid
who is good at following instructions or protocol. She is a rebel.
Anti-establishment of sorts. If we tell her not to do something, then we can
say with a fair bit of certainty that she will do it. If kids want to play a
game that flows a certain way, then she will be sure to not follow it. It
worries me because I don’t know what’s in store for her as she enters
kindergarten later this year. I don’t know how many instructors will accept
Samaira as she is and accommodate her needs, versus prefer sending her to another
environment where her needs could be more conveniently met.

I don’t know how many of her classmates will accept her even
though she will not play Hide & Seek, Whisper Challenge, or Snake &
Ladder per the rules of the game. How many of her friends will still include her?

One aspect of inclusion is ‘awareness’. Knowing that there
are differences and understanding what they are. Another aspect of inclusion is
‘acceptance’. Knowing that there are differences and it is ok! It really is ok.

So, as Sammy will begin her Big 5 transition to kindergarten
this Fall, I am more insecure than ever. Siddharth does not share my
insecurity. He has more faith in the system, people, us, and above all – Sammy.
I am insecure because we will truly be stepping out of our little bubble in
which everyone sees Sammy for who she is, and not for what she has or what she
can do. I can only hope that the new wave of people in her life will encourage
her, include her and accept her.

Something I have heard since Samaira was born was that we shouldn’t
overthink putting Samaira in schools that are highly ranked. It is probably
better for her to be in schools that are average in rank, because she will have
a sense of accomplishment in the things she can do as the environment will not be
super competitive. To be honest, it isn’t something we have internalized, yet. So
far, our circle of family, close friends (more like family), schools, day
cares, teachers – have all celebrated Samaira. Included Samaira. Accepted
Samaira. This encourages her to do more and be more.

At the same time, I also realize that 5 year olds are like
little adults. They are intelligent. They are sharp. They understand the
differences in skin color, language, and abilities. And while they are innocent
and naïve, without appropriate guidance from grown-ups, they may not always
know how to treat these differences. Some kids will not let these differences
come in the way of their friendship. They might even provide encouragement
& help as needed. But there could be kids who don’t know how to process and
deal with these differences. Their reactions may range from confusion, to
mockery, to non-inclusion. While I wouldn’t blame kids for their behavior, it
for sure will hurt when it happens. And that’s when I hope, we the adults can
play a role in creating awareness and acceptance about differences and
disabilities.

In the first 5 years of our journey with Samaira, we haven’t
felt the need to have the “talk” with other kids and parents. We have gone with
the flow and let everyone discover who Sammy is and everything she can do. I am
not sure we can continue to go with the flow much longer. I think we will need
to have deliberate conversations and engagements that make the upcoming
generation more sensitive and accepting of disabilities.

Down syndrome does not define Samaira. It is an integral
part of her. But there is a lot more to her than down syndrome. Her abilities
surpass any label that could be associated with her. So, this year, on 3/21, I
want to talk about being inclusive. In schools. In activities. In play. In society.
It wouldn’t benefit just Samaira, but also folks who are being inclusive. It
makes society more open and tolerant to differences. Something we could all use
a little extra dose of given everything that’s happening in the world.

Imagine this society: Different skin color, different
language, different religion, different god, different faith, any disability,
different clothing, different values….no problem. Let kindness and friendship prevail.
Everyone is welcome! This is the essence of being human.

If you are curious about down syndrome, I encourage
questions, conversations, and discussions. We will be happy to share our experiences
and whatever we know so far. We will do our best to find out what we don’t know
to answer your questions. Talking and asking questions is the first step to building
awareness and acceptance.

Happy 3.21, folks!

PS: 3.21 = March 21st = World Down
Syndrome Day. Medically, down syndrome is defined by 3 copies of the 21st
chromosome. That’s all there is to it. An extra copy of a chromosome. It only
means there is more of Sammy to love! Lucky us!